Why snowballs in summer, you ask? Today it was 98F at 3:30 this afternoon in the northern part of the state. I discovered this after about two hours of a doctor's appointment for Emily that left me feeling like someone had thrown snowballs at me a few times.
It started out simply enough. We drove 138 miles (one way) to the new ENT's office for a new culture of Emily's sinuses. I really didn't know what to expect. I assumed that he would look at her, take a history and have us come back for the culture. First a resident came in and took the info. I gave him my list of her meds, along with some of the bottles because they ask for them. Because I'm learned how to be pretty prepared now, I had printed out her CVS med history from November to now so that they could see all of the antibiotics that she has been on since November. I even highlighted them. We discussed history, her pneumonia in 2007, the somewhat frequent bouts of bronchitis that she gets, and of course this stupid sinus infection from hell. The resident walked out to confer with the primary doc, and then they both came in to see us together. The first question that the main doctor asked me after a brief introduction was, "has she ever been tested for Cystic Fibrosis?" I think my jaw probably hit the floor. I have always thought of that as something that starts from birth and can kill you pretty fast. Of course, times have changed and those affected are now living much longer, but also there are apparently different strains. Some people are very affected while others have milder forms. It took me a few minutes to mull this over. We're not sure what to make of this now. She does have several of their symptoms- quite a few- but not so much the chronic cough that I have always associated with CF. Also, they say that most people that are tested do not have CF, so that helps me to feel better. If you'd like to read more, I have found this handy PubMed article on Cystic Fibrosis.
They asked me if she had ever been scratch tested, or if anyone had brought it up. When I said no they said that they assumed not because (apparently) people with Dermatomyositis cannot be scratch tested? Good to know! I had no idea!!! That kind of hit home that, no matter how much research I do, I will always miss something. (Unless I go to medical school!!! :)
The next thing that got me was Emily's reaction. They asked her if they could put ONE DROP of Lidocaine into her nose to be able to do the culture. Nope. I begged, I pleaded, I tried to rationalize. The doctor's left the room and came back TWICE to give her time to collect herself. We really needed that culture. But she just wouldn't do it. She was so upset and I was so frustrated!
What they would have done was taken a little cotton scraping of her sinuses, then checked for bacterial growth. Upon finding bacteria they would have tested it with different antibiotics to see which one would eliminate it best. Pretty important, huh?
Instead of the culture, we are now scheduled for sinus CT on May 21st at 8 A.M., a follow-up ENT appointment at 11 A.M., and then... IF she's not sick... (HA!) we will be at the hospital from 12:30 until sometime the next day. Somewhere in the middle of all this we are supposed to go back up there for the Cystic Fibrosis (CF) test, the sweat test. They are supposed to call me tomorrow to schedule the CF test, so I will likely point out to them that if she is sick on the 21st she can't get her meds. We'll see then if they want to change the appointment. I didn't even think about that until we got home. Boy, was I ticked!!! Not at the doctor's. They did all that they could and they had the utmost patience. It was just everything else.
So now I am pretty certain that she is going to be sick for the next 3 weeks. I am working on going to part-time at work working weekends only, but we need to get more people in first, so I can't take time off right now. She's simply going to have to deal with her decision. Maybe it will help her to make better decisions in the future. It's just hard because it could have been so easy.
The funny thing is that, between her and Zachary, I have always worried more about Zach with respiratory problems. If she's positive we'll definitely have to have him tested.
We are getting closer and closer to all set for home schooling. Ya'll have no idea how huge that will be for me, for the kids. I cannot keep running ragged between work, PT/OT, trips to the hospital and not having any time to make phone calls and set things up that I need to. I think this will be the answer to a lot of prayers. I know it will be a lot of work, but we all really need it!
The happy point of the day was finding out that her Medic Alert bracelet and kit came in! They have it engraved with "Bard Port Implanted Port, Connective Tissue Disease, Raynaud's". It's perfect. I'm so glad that I finally did it. It's been a long time coming. And with that, I have to head to bed. I have to go crazy at work tomorrow, then grab the kids from school for Em's therapy sessions. Fun, fun! Have a great day!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Tuesday, May 1, 2012
Snowballs in summer
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I am so sorry that on top of everything else yesterday you now have to worry whether another diagnosis is headed Em's way. I can understand how yesterday was as frustrating as it was. I truly hope that Em will figure out that it would have been much easier to do the culture. Fear and anxiety are illogical emotions and matter how hard we try they cannot be reasoned with. Your family remains in our daily prayers.
I know that Home Schooling is going to make a huge difference for all of you and I am excited for both you and the kids. Getting down to part time working weekends will help tremendously when you are able to do that as well.
Wishing you luck with the upcoming appointments and tests and hope that illness does not get in the way of meds and everything else they need to be healthy for.
I just wanted to remind you that you are one of the most amazing mom's I have ever met. You manage all of the craziness with love, patience and grace. I hope in all of the madness you find some time for you for your health and well being. You cannot look after anyone if you get run down yourself. You cannot know everything nor are you expected to know everything around your children's conditions. You know so much more than the average parent could ever hope to know and comprehend. So please don't ever doubt in yourself or what you know. You will always be the expert when it comes to your children.
((HUGS)) LOVE & Prayers for you and your family.♥
Danielle, I knew something was up...I should have called you. Ugh I am continueing my prayers for you and your family. I am always in awe of your strength and ability to prioritize and plow through what you need to do from day to day. I am here when ever you need to talk. I am certain that things will feel smoother when you start home schooling. I hope I get to see you this weekend. Love youReplyDelete